About Eddie Paul

We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul. This is very much a success story, and hope that by sharing this, it will give others inspiration as he gave to all who knew him.

We already had a little girl who was almost three, when we were excited to find out that we were expecting again. On September 20, 1957 Eddie was born but things did not go as planned. He was born without the skin on his legs and feet and one finger. He blistered easily to the touch, and in 1957 no one knew what was wrong with him. Finally two months later the doctors told us they thought it was EB. They also said he probably wouldn’t live very long.

We brought him home and I learned how to bandage him. I learned very fast that I had to pick him up by supporting his bottom and chest rather than under his arms. It was hard raising Eddie because I had no information and it was all trial and error. I wish I had known more because I could have avoided so much suffering for him to go through.

He couldn’t suck from a bottle because it blistered his tongue. So he learned to drink out of a cup when he was seven months old. It was hard taking him anywhere because we had to explain to the public about his condition, even though no one understood. But we took him anyway because we felt everyone should know about EB.

Our doctor had prescribed penicillin for both children just to ward off infection. We let them play and do almost everything that other children did including playing in the sandbox and dirt.

Ed with his daughter Melissa

We knew some damage might occur but they would be better off emotionally. When Eddie asked to ride a bicycle, I felt bad but I had to say no because that would be too dangerous. I told him that as soon as he’s old enough I would teach him how to drive a car.

As Eddie grew older he learned what he was able to do and what he couldnt. If he couldnt accomplish things normally he would find a way that he could. Actually he was a good inventor. He was active in school and enjoyed impersonating famous people. He liked to make people laugh and made a lot of friends. Our favorite impersonation he did was Elvis.

Ed went to Kent Sate University and received a bachelors degree in Telecommunications. He had various jobs including NBC, cable TV and Case Western Reserve University. His last job was with Rainbow Babies and Children’s Hospital of Cleveland . He was the producer of in-house programs on the Rainbow Channel.

He met his wife Sandy and married in 1991. They had a daughter, Melissa, in 1995.

Ed was diagnosed with metastasis squamous cell cancer in the summer of 2001 and found out it was terminal on 9/11. He suffered and told me its quite painful and I told him that I understood, because what hurts him hurts me also. He fought a courageous battle but died October 4, 2001 at the age of 44.

A plaque now hangs at the hospital where he worked with the motto, Do just once what others say you cant do, and you will never pay attention to their limitations again. This is the way Ed lived his life and why he is a success story.

Ed with mom and dad

We were very proud to be his parents. We will miss him but will always have him in our prayers and in our hearts.

Thank You for Visiting!

About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

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